Advocates raise awareness of celiac disease

Celiac patient Barbara Callanan is vigilant in her

Celiac patient Barbara Callanan is vigilant in her home, separating gluten-free and glutinous products to prevent contamination. (Sept. 22, 2012) (Credit: Bruce Gilbert)

The salad wasn't supposed to come with raisins. Or on one occasion, a smattering of bread crumbs.

So if Barbara Callanan is eating out and is told a dish will be made special for her in the back, that's her cue to leave.

It's not that Callanan is picky. Well, actually she is, but it's for her own good. She has celiac disease, an autoimmune disorder that prevents the body from digesting gluten, a key component of wheat, barley and rye.

“A lot of people think they do gluten-free right, and they don't,“ said Callanan, a Long Beach resident who has had to become her own advocate in a world where most restaurants are off-limits to her. “They get people sick.“

For Callanan, a chef who trained at the Culinary Institute of America in Hyde Park, and the 1 percent of the population with celiac disease, that means many carbohydrates are out. So is soy sauce, and for good measure dried fruits, like raisins, because they are often coated with flour. For some patients, ingesting just a milligram of gluten will set off their symptoms, often painful headaches, diarrhea and lengthy periods of fatigue.

There is no cure for the disease. Switching to a gluten-free diet is often recommended to ease symptoms, but according to research, symptoms persist in nearly 30 percent of patients who do that.

It also means added vigilance at home, where Callanan, 52, lives with her mother, Lillian. The shelves in her cabinets and refrigerator are arranged meticulously. Glutinous items are stored lower than gluten-free ones, so if crumbs fall, Callanan's meals are not contaminated.

Though more eating establishments offer gluten-free fare, Callanan rarely eats out, and only if a restaurant has a printed gluten-free menu. Though she will never try her famous manigot, or semolina pasta, she prepares it just the same for others during the holidays.

 

Facing unique challenges

While many have made peace with their food restrictions, celiacs said two challenges loom large: The restaurant industry is ill equipped to nourish them, and even worse, physicians are often too late with diagnoses. From the moment symptoms first appear, a patient will wait, on average, up to 11 years to get diagnosed. And physicians often mistake common symptoms, like fatigue and constipation, for signs of old age or other illnesses, such as irritable bowel syndrome.

“The symptoms are not symptoms that the doctor would focus on to point straight to celiac disease,“ said Mary Schluckebier, executive director of the Celiac Sprue Association.

Medical professionals say the symptoms can grow worse the longer they go untreated. More complications may arise, the most serious of which are several forms of cancer. In some cases, said medical professionals, prolonged exposure to gluten may increase the risk of lymphoma. According to research, celiacs are nearly twice as likely to develop cancer.

So an advocacy group of patients, physicians and researchers is seeking to raise the profile of the disease as part of the Celiac Sprue Association's national conference, which begins Thursday in Hauppauge. The challenge, said Schluckebier, is attracting more physicians to the field of celiac research.

“When the diet is the cure, it is difficult for pharmaceutical companies or physicians to really look for a drug or a medical cure,“ she said.

The danger in that, she added, is that fewer doctors are testing for celiac disease when patients are symptomatic.

“If doctors see some of these chronic symptoms like fatigue, mouth sores, skin rashes, a family should think it could be an autoimmune disease like celiac,“ she added. “But right now it's not the first thing doctors are thinking about. You have to think celiac disease before you diagnose it.“

 

His father's advocate

Eight years ago, Jim Blank was ready to diagnose his father, Francis, with celiac. A few weeks after his left hip was replaced, FrancisThe resistance rang familiar. Eleven years earlier, a bedridden Blank endured his own form of diagnosis purgatory. He had dropped 50 pounds in just a few weeks — to a gaunt 127 — and the doctors wavered between linking the weight loss to various serious illnesses. Eventually, a biopsy confirmed Blank had celiac disease, and a gluten-free diet was the trick. Once on it, his health improved: He was gaining 3 pounds a day.

So during his father's hospitalization, Blank persisted. If the doctor wouldn't screen his father for celiac disease, he warned, “leave and get me somebody who's going to listen.“

Blank, 53, an elementary school custodian who runs the Long Island support group of the Celiac Sprue Association, lives with his parents in their home in Plainview, where he cares for his dad, a quiet but cheerful man who once worked as a school groundskeeper. It's been eight years since Blank was proved right. His father's disease is under control, but they must remain vigilant.

When the elder Blank, now 86, was recovering from a second hip surgery a few months later, Blank made sure the staff at the rehab center understood his diet. Still, an aide delivered Francis Blank a plate of breaded chicken.

“You sort of have to take the bull by the horns and be your own advocate,"said Pam King, director of operations at the University of Maryland Center for Celiac Research. “Part of the problem is education.“

The good news is that there might be a new drug that lets celiac patients slip up occasionally. But they shouldn't get too comfortable.

“It's not a way of giving permission to go off the diet,“ Schluckebier admonishes.

 

Eat, drink and learn

WHAT: 35th Annual Celiac Sprue Association Conference
WHEN: Oct. 4-6
WHERE: Hyatt Regency
1717 Motor Pkwy., Hauppauge
Thursday: Clambake and wine tasting
Friday: Guest speakers from Columbia University and St. John’s University
Saturday: Roundtable discussion, led by field experts

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